- Posted October 9, 2012 by
This iReport is part of an assignment:
Tested for the breast cancer gene?
Positive Results: From BRCA fear to advocacy
I was midway through my junior year of college when my mom was diagnosed with breast cancer. In the 1980s the breast cancer genes had not yet been discovered and there was no way for me to know if my mother’s early bout with cancer was due to heredity or just bad luck. But this did not stop me from asking many questions of my doctors. What can I do to keep from getting breast cancer? Does the fact that Mom was so young when she got it affect my risk? Should I avoid birth control pills? Should I have a mammogram now?
The gene known as BRCA1, the breast cancer gene, was discovered the year my first son was born and BRCA2 was discovered a year later. This was big news but testing women like me for mutations in these genes was not common in the 1990s. Around 2003 my doctor began to talk to me about being tested for a BRCA mutation because breast cancer under age forty-five is one indication that the cancer may be hereditary. My mom was only forty-three at the time of her diagnosis, and she was not the only person in my family to have had breast cancer. Her grandmother had it also.
My doctor warned me that if the test were positive I would have to face the limited number of options available to reduce my risk. The best would be prophylactic mastectomies and breast reconstruction. A positive test result meant facing painful, scary choices. I would have to decide whether to remove my healthy breasts, or my healthy ovaries, or both. As preventive measures, the removal of my breasts and ovaries would be the best way to avoid getting breast cancer or ovarian cancer. But surgery to remove the breasts that had just finished nursing my son seemed almost unthinkable, as did the idea of menopause when I was still thinking about another baby.
I found these conversations with my doctor deeply troubling. Medical technology could now answer some of the questions I had been asking for more than a decade. But did I really want to know the answers? What if I tested positive for the BRCA gene? What would I do? My doctor’s advice echoed loudly in my mind: Don’t do this until you are ready to deal with the answer.
I procrastinated. I wasn’t sure I was ready to deal with knowing information that was clearly going to be life altering. But as I neared the age my mother was when she discovered her first lump, I decided I did want to know the information stored in my DNA. I would deal with the results, whatever they might be. But first I had to talk my mother into testing as she was the person who had had cancer, and that was hard. At that point, she had been a breast cancer survivor for more than twenty years. Her fear of a recurrence or another cancer had receded over time. By asking Mom to test for the breast cancer genes, I was bringing the topic front and center again.
Mom tested positive for a BRCA2 mutation. The news came as a shock despite Mom’s early breast cancer diagnosis. Ours is not a typical BRCA family that has lost many women to breast and ovarian cancer. In fact, nobody in our memory has died of these diseases.
Three weeks later I learned that I share my mom’s genetic mutation. I had lived for many years with the fear that I would get breast cancer in my early forties, as she had. But seeing the words “POSITIVE FOR A DELETERIOUS MUTATION” on paper almost made my heart stop. Getting breast cancer just like my mother did was more than hypothetical—it was likely—and I had to confront the scary choices of surveillance versus prophylactic surgery. My mouth said I would probably have mastectomies and I needed to know more about the different reconstruction options. But even as I said this, I simply could not wrap my mind around the idea of cutting off my beautiful, healthy breasts. The logical part of my brain said if my breasts were going to give me cancer, they should go. The emotional part of my brain screamed BUT NOT ANYTIME SOON! My first thought was that I would put off mastectomies until my youngest son was in college—in about ten years. Then I would have time for surgery and recovery because I wouldn’t have children to chase. Looking back, I believe my normally rational mind was not fully functional at this time.
Life went on but I felt as if I had entered an alternate reality, watching the world through a camera lens, one step removed. Fear of breast cancer became my constant companion. I took my kids to the beach and watched them play in the surf. They were shrieking, jumping, diving, laughing, and generally having a fabulous time. I looked at my breasts in my bathing suit and wondered what life would be like without them. My chest felt tight, like a lead weight was sitting on it. It was hard to breathe.
When I opened my eyes each morning, breast cancer was the first thing to enter my mind. Unless I made a great effort, it was also the last thing I thought of at night. My brain was spinning with questions and my calendar filled with doctors appointments. The first step was a breast MRI but it offered no reassurance as it found something suspicious near my chest wall. I thought I had waited too long and that cancer had found me.
One of my most valuable resources during this time was FORCE, Facing Our Risk of Cancer Empowered (www.FacingOurRisk.org), an organization started by a BRCA-positive woman to help women just like me. The FORCE web site provided solid medical information and, perhaps more important, through FORCE I met other women facing the same decisions.
What was most helpful was going to lunch with a group of BRCA-positive women. Several of these women had already had prophylactic surgeries while a few of us were trying to decide what to do. Being able to talk to these women, to hear their stories, to ask them the questions that I could not ask my doctors—such as how they coped emotionally and how surgery affected their sex life—was a turning point in my thinking. The women who had already undergone prophylactic mastectomies were each at different stages of their reconstruction journey. Most also had removed their ovaries. Our conversation was frank and intimate. At the end of lunch, we headed to the ladies room en masse for a “showing.” They opened their blouses to reveal breasts at all stages of reconstruction, from just a few weeks post mastectomy to completely finished and the many stages in between. It was a revelation for which I will be eternally grateful. Those just out of surgery looked significantly better than I had imagined, and the fully reconstructed breasts were amazing. They looked far better than any photographs I had seen on the Internet and raised my estimation of what was possible with breast reconstruction. To see these young women, near my age or younger, who looked good and were happy with their decisions to have surgery, made what I had thought was an almost impossible decision seem reasonable.
Less than five months after learning about my BRCA mutation I was wheeled into surgery to remove my breasts not knowing if I would wake up to a cancer diagnosis. Fortunately for me, the suspicious lump was benign but other tissue in my breasts had LCIS, lobular carcinoma in situ. I was incredibly lucky. My mastectomies were the only treatment I needed.
It took another four years before I was ready to part with my ovaries and enter surgical menopause, but, in the meantime, this experience turned me into an advocate for the high risk community. I co-authored “Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer” with Dr. Ora Karp Gordon; I became an advocate and outreach coordinator with FORCE: Facing Our Risk of Cancer Empowered so that I could help other women who are struggling with these life changing decisions; I am captain of a 5K team for Kickin' Cancer; and I became an Advocate in Science with Susan G. Komen for the Cure because I believe that the only way our daughters and granddaughters will have better choices is through research.